Comparing the quality of care for long-term ventilated individuals at home versus in shared living communities: a convergent parallel mixed-methods study

Background People on home mechanical ventilation (HMV) belong to a heterogeneous population with complex care needs. In Germany, outpatient intensive care is provided in people's private home (PH) or in shared living communities (SLC). Increasing patient numbers have led to criticism of the quality of care in recent years. Since quality deficits from the perspective of those affected are largely unclear, the following research question emerged: How do interviews with ventilated individuals and family caregivers explain any differences or similarities in the quality of care between PH and SLC? Methods This study used a mixed-methods convergent parallel design, where quantitative and qualitative components were separately collected and analysed. The quantitative component (structured interviews and online survey) included ventilation characteristics, health-related resource use, health-related quality of life (HRQL) measured with the Severe Respiratory Insufficiency Questionnaire (SRI; range 0-100; higher scores indicated higher HRQL) and the Burden Scale of the Family Caregivers short version (BSFC-s; range 0-30; higher scores indicated higher burden). The qualitative component (semi-structured interviews) focused on people's experience of person-centred care. Data were merged using a weaving method and the Picker framework of Person-Centred Care. Results The quantitative component revealed that ventilated individuals living in PHs were on average 20 years younger than participants living in SLCs (n = 46; PH: 46.86 ±15.40 years vs. SLC: 65.07 ±11.78 years; p = .001). HRQL (n = 27; PH: 56.62 ±16.40 vs. SLC: 55.35 ±12.72; p > .999) and the burden of family caregivers (n = 16; PH: 13.20 ±10.18 vs. SLC: 12.64 ±8.55; p > .999) were not significantly different between living situation. The qualitative component revealed that person-centred care is possible in both care settings (ventilated individuals: n = 13; family caregivers: n = 18). Conclusion This study describes a care situation that is as heterogeneous as the population of people with HMV. HRQL and the burden of family caregivers are highly individual and, like person-centred care, independent of the living situation. Policy decisions that facilitate person-centred care need to recognise that quality of care is highly individual and starts with the free choice of the care setting. Supplementary Information The online version contains supplementary material available at 10.1186/s12912-022-00986-z.


Fast access to reliable health advice
Getting access to the right services at the right time is essential to receiving high quality care and treatment, and reduces the likelihood of people experiencing unmet needs. Access can be an issue at various points throughout people's care journeys, including the ease or difficulty of scheduling appointments, the time spent waiting for referrals or admissions, and the availability of appropriate clinicians and advice. Speed of access matters in a crisis, too, where delays can lead to deteriorations in people's conditions -and where a rapid response can be of vital importance.

Description
• Appropriate health care network.
• Direct contact to known and trusted advisers.
• Support from an interprofessional team.

Private home
Communication is usually very independent, [

Effective treatment delivered by trusted professionals
Positive therapeutic relationships between patients and staff are at the heart of person centred care. People should receive the most appropriate and effective care for their needs and be treated in a way that recognises and respects the outcomes that matter most to them. Interactions with care professionals should inspire a sense of confidence and trust.

Description
• Neglect of weaning and rehabilitation potentials.
• Discrepancy between desire and reality.

Private home
I had imagined that I breathed spontaneously during the day via a 'heat and moisture exchangers' and only needed the support of a ventilator when lying down. In retrospect, it was a mistake that after the application of the tracheostomy tube, I spent 10 days as an inpatient for observation almost exclusively lying down with ventilation. During this period, the lungs stopped actively breathing -[...] irreversibly -and all efforts at 'weaning' were unsuccessful. This could have been done better. (Ventilated individual, ID02, §68)

Shared living community
At the beginning, I had the impression that he didn't really accept it. [...] He will always have to live with this tube, and that won't get better. Because I think the times of improvement are over. (

Continuity of care and smooth transitions
Often, people's care journeys will bring them into contact with a range of care providers and health and social care staff. Providing a sense of continuity across these is vital to ensuring that people have good overall experiences. Continuity of care is not just influenced by the relationships people have with staff, but by how well information is shared between staff and services and by how organisations interact with one another.

Description
• Discharge without support and consultation.

Private home
He spent three weeks in the hospital at the intensive care unit to be weaned form ventilation, and then we were discharged with the devices and lots of equipment and had to see how we could manage it. We were well provided with medical aids.

Description
• Avoid complex and hazardous transports and stressful hospital stays.
• Need for medical home visits.
• Need for specialised outpatient treatment centres.

Private home
Since a medical centre for people with disabilities has been opened in my hospital and an inpatient stay is always quite time-consuming for me, we now do the ventilation control on an outpatient basis. I have a device at home for determining the nocturnal CO2 readings, so I can bring information about the nocturnal course to the outpatient appointment. (Ventilated individual, ID02, §62)

Shared living community
It's about transport. Last time we had to wait almost six or even more hours for transport. [

Involvement in decisions and respect for preferences
People have the right to be involved in their health and care. Involvement in care supports people to play an active role and to feel more confident in considering treatment options, associated benefits and risks, and in making informed decisions. Care should be delivered in a way that is sensitive to the needs and preferences of the person. Focusing on the patient as an individual includes treating the person with respect and with sensitivity to their background, social and cultural values. Active listening and enquiry can be important to elicit people's preferences, which should not be assumed.

Description
• Living a normal life despite dependence on machines and people.
• Making own decisions balancing benefits and risks.
• Being accepted and getting to equal or feeling incapacitated and excluded.

Private home
The intensive care service is always there: 24 hours.

Shared living community
We go on excursions. For example, we once went on holiday to Lake Chiemsee for ten days. [...] There were three of a us. And there was a nurse who also drove us. (Ventilated individual, ID04, §55-57)

Description
• Respect and interest for people's preferences.
• Support in recreation and leisure activities.
• Care life balance.

Private home
Fortunately, I have an optimal social environment -family, friends and acquaintances. I imagine that it is a challenge to communicate with me and also to be able to put up with my "external appearance", so I am happy that those around me can cope with it. Thanks to my wife, family and carers, I am also able to go on excursions and even holidays. (Ventilated individual, ID02, §43)

Shared living community
We meet once a week, in the afternoon, and talk about what we're going to eat the next week [.

Clear information, communication and support for self-care
People using health and care services should receive reliable, high quality and accessible information at every stage of their journey. How and when information is communicated can be as important as the message. Any assessment of information needs should consider not only content, but also how and when information is provided. By ensuring that the way information is communicated is tailored to the individual, it means that people are better placed to understand and make informed decisions about their care. Support should be provided by staff that allows people to develop the knowledge, confidence and skills required for self-care.

Description
• Access to individual, tailored information at every stage of the care journey.
• Enabling informed decision making.
• Having a trusted advisor.

Private home
For my wife, it is really existential that everything is right, in all respects. That's why she and I attach great importance to our nursing team being open, yes, and talking and being able to talk to us about everything, because that simply has to be, because obviously they also break through the highly personal area. And [...] you simply need the necessary trust. (Family caregiver, ID23, §31)

Shared living community
When [my father] was to be discharged, the social services at the hospital helped me a lot with the formalities and told me that there were SLC specialised for intensive care, which I didn't know before. (Family caregiver, SLC, ID24, §87)

Description
• No empowerment to make informed decisions.
• No support in developing knowledge, confidence and skills for self-care.

Private home
There is a lack of support from the health insurance [.

Involvement of, and support for, family and carers
Providers and staff should acknowledge the importance of people's families, carers, and friends in their overall health and wellbeing, and should welcome their involvement. This includes providing support to help family members and carers to assist patients during and after care. Equally, the emotional impact that caring responsibilities have on family members and carers should not be underestimated; the ability to access support and to speak to staff about worries is important.

Description
• Care determines daily life (e.g., high workload, high bureaucracy, lack of flexibility, change in social life, financial burden, restrictive housing conditions). • Feeling vulnerable and powerless (e.g., emotional impact, fears and worries, physical strains).

Private home
At the end of the day, it's always a balance between relief through the care service and privacy. And sometimes it's difficult to know what you need more. So, spontaneity, going out with friends, always presupposes that I also have someone for my son. And that's not in my life now, it has to be planned well in advance or you just have to be lucky that someone is available at short notice, which tends to be the exception. (Family caregiver, ID18, §13)

Emotional support, empathy and respect
To deliver person centred care, a caring holistic approach that includes the provision of support and empathy is needed. For care to be compassionate, it must be delivered with respect, dignity, sensitivity and with an understanding about the person.

Description
• Maintain a professional distance.
• Being a professional and being part of a family.

Attention to physical and environmental needs
Physical care that comforts people is one of the most essential services that staff can provide. This ranges from pain management to assistance with activities and daily living needs. The surroundings and environment in which people are being cared for should also be considered, including the ability to provide care in privacy, in a clean and comfortable setting, and which allows appropriate accessibility for visits by family and carers.

Description
• Nonverbal or technology assisted communication.
• Listen, be patient and pay attention to physical signals.

Private home
After